Woman told symptoms were IBS discovers actual cause 4 years later

It wasn't until she was 31, and after copious amounts of research, that she finally received the diagnosis she needed.
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Caren G., a 33-year-old who works in education in New York City, dealt with uncomfortable constipation her entire life. As a child, doctors told her it wasn't uncommon for girls. As an adult, theories ranged from irritable bowel syndrome (IBS) to stress from life changes. It wasn't until she was 31, and after copious amounts of research, that she finally received the diagnosis she needed: pelvic floor dysfunction.

The pelvic floor is a cluster of muscles that supports organs such as the bladder, uterus, and rectum. Pelvic floor dysfunction refers to the inability to control these muscles, hindering bowel movements and urination, or making sex painful. Most causes of it are unknown, though childbirth complications or injuries to the pelvic area can play a role (Caren had neither). Traditionally, doctors focus on treating symptoms in the affected organ, like the rectum, before looking at the melon-sized web of muscles and ligaments in the pelvic floor—but 1 in 3 women has a pelvic disorder, according to the Kaiser Permanente Division of Research. Many go undiagnosed and untreated.

As long as I can remember, I've always had constipation issues. My parents thought it was something normal for me as a child, and I grew up thinking that too. Doctors told me it was common for girls, especially when going through transitions like puberty. Later on, they told me life transitions like graduating college or finding a job were the cause. It was always chocked up to a life change, not an actual condition.

It wasn't until I was 27 years old that I finally saw a gastroenterologist, because I was beginning to experience acid reflux. I had a really great gastroenterologist who I trusted, but sometimes when you go to the doctor, it's all about figuring out what something is not before you diagnose what it really is.

At first, I was put on every acid reflux medicine you could prescribe, and it helped, but I was still constantly uncomfortable because of the constipation. Eventually, the gastroenterologist put me on two drugs for constipation, Amitiza and Linzess, but neither worked. I was even taking them with over-the-counter products, like stool softener and MiraLax, a laxative solution. Everything I tried just seemed to further my discomfort.

I had two colonoscopies in one month to rule out Crohn's disease, which involves chronic inflammation of the digestive tract lining, or colitis, inflammation of the colon. It was neither.

The Misdiagnosis

Finally, my gastroenterologist told me I had irritable bowel syndrome (IBS) (an intestinal disorder with symptoms such as diarrhea, pain, or constipation), which is basically an umbrella term for anything that's not Crohn's disease or colitis. Still, only a very small percentage of people experience constipation caused by IBS. It was very frustrating because I knew I didn't feel well, and I just wanted a label for what I had.

Under the direction of my gastroenterologist and the guidance of a nutritionist, I tried the FODMAP diet, which is a very specific eating plan that categorizes foods that could be gaseous or irritating to your bowels. It's an elimination diet where you nix all foods that fall into those two categories and then slowly re-introduce one food at a time to see which ones give you a problem. A lot of the foods did give me problems like bloating and more constipation, because I wasn't getting the right therapies to begin with (spoiler: I didn't have IBS).

I was mentally and emotionally exhausted. I was too afraid to re-introduce foods into my diet, scared that they would hurt my stomach or make me really constipated. I didn't want to go out to eat because I couldn't eat a lot of foods at restaurants—take garlic, for example, which is everywhere in New York City cuisine. I turned down plans because I was afraid to go out and not feel well, or to order something but have to dramatically customize it at a restaurant. It's embarrassing being that person, and I didn't want the attention on me. All these little things were building up and changing who I was, and I knew there had to be an answer. I couldn't live my life like that.

When I was 28 years old, I had to go to the emergency room. I had gained 16 pounds of fluid and stool in 36 hours, and a CAT scan showed an ileus (an obstruction of the intestine) had formed and could cause a rupture. I couldn't walk or eat because I was in so much pain, so the emergency room doctors did two very intense procedures to remove the fluid and the stool. It was traumatizing and embarrassing to have to go to the emergency room for that, but most of all, it was scary to not know if it was something serious or something that could be avoided.

Two years later, the same thing happened again.

At this point, I knew I needed to do the research and really advocate for myself, and understand how to make sure it didn't happen again. This condition had completely taken over my life. I love to exercise, but was unable to go running or to a spin class because I was so bloated. I had to call in sick for work a few times because I was in so much pain.

From then on out, if I wasn't working, I was researching. That research, along with a suggestion from my gastroenterologist, finally led me to Columbia University's Center for Gastrointestinal Motility and Physiology. It has a very comprehensive program that involves an anorectal manometry test (which analyzes the muscles and nerves in the rectum and anus), dynamic defecography (imaging that observes the mechanics of your defecation as it happens), and an endoanal ultrasound (in which an ultrasound scanner is inserted into the bowel and anus).

The Moment Of Truth

It was a lot of testing, and it's invasive testing—it felt humiliating and frustrating. I spent two hours in the dynamic defecography test because I couldn't defecate (or poop) on demand. But finally, after all of it, I was given a diagnosis: pelvic floor dysfunction.

I felt a wave of relief, not because it was cured, but because I, at last, knew there was an answer and I was on the road to fixing the problem. What's wonderful about Columbia is they put everything in really simple terms: My pelvic floor dysfunction diagnosis meant that the muscles in my pelvic floor, for whatever reason, were weak but also had trouble relaxing. Both of these things made it difficult for me to go to the bathroom. It could have been something I was born with, or it could have been something that happened over time—the doctors didn't know. But what we did know was that it could be changed with physical therapy.

The Road To Recovery

Once I was diagnosed with pelvic floor dysfunction (at this point, I was 31 years old), I started an 8-week treatment process of biofeedback, which tracks how the muscles in the bowel function as you tighten and relax them. This information helps the nurse or doctor create an at-home exercise program for you to strengthen the necessary muscles. It's about retraining your muscles and learning strategies for how to go to the bathroom, use your muscles, and strengthen your pelvic floor. (Try these six easy exercises to strengthen your pelvic floor—and help you orgasm.)

The exercises were almost like Kegels in a way, with constant tightening and relaxing. My doctors also gave me other strategies, such as using a stool when you go to the bathroom to learn how to properly sit on the toilet (propping up your feet on a stool can help you mimic a squatting posture, which relaxes the muscle around the rectum that is responsible for continence). I even learned how to schedule half an hour in the morning to relax and not rush, to let my body breathe and give myself time to "go" if needed.

Since those eight weeks of biofeedback, I haven't needed to go back to the doctor, and that was a year and a half ago. I continue to use a stool every day and do the exercises when I feel I need them, and I've also started to eat more foods again.

All of those little things opened up a whole new world for me, and getting the right diagnosis completely changed my life. A weight has been lifted to not think about constipation as soon as I wake up in the morning. My husband and I can share a meal now, and I can spend time with friends without being nervous about the restaurant we're going to. I'm also not as wary about traveling—if you're, say, on a bachelorette party weekend, the last thing you want to do is give yourself an enema (which involves injecting liquid into the anus to encourage defecation). I'm very lucky that my friends and family have been so supportive, but it didn't make those things better or easier.

Most of all, I learned to advocate for myself, voice how I feel, and insist that there had to be an answer. It couldn't be just that it was normal—this is a condition. Most women don't talk about it, or they think it's just who they are. They think you can be uncomfortable, and it's okay. I know because that was me for a long time.

My advice: If you think something's wrong, do your research. Continue to ask questions. I always had a list of questions and I made sure I got them answered, or that I figured out how to get to the right person who could get me the answer. For me, doing that led me to a correct diagnosis and the treatment I needed—and that completely changed my life for the better.